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Starting to show symptoms of UC ...3rd infusion of Remicade not until 31st

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Ulcerative Colitis
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Posted 12/15/2009 11:40 AM (GMT 0)
Just when I thought everything was just hunky dorry, I am noticing mucus and blood in my stools. Maybe I have been doing too much? Yesterday, my daughter and I baked four batches of cookies. I have been waking up super early (4 am some days) and going like the Everready Bunny. Guess I want to get as much done while in remission as possible. I also ate meatballs and spaghetti last night.....homemade meatballs. The stools are formed and I don't have the urgency. I was down to 5 mgm of prednisone but now guess I have to bump it up to 10 mgm. At least the doc said to do that should my symptoms start to come back.
My third Remicade infusion is scheduled for the 31st. Anyone else on Remicade have this happen?
Posted 12/15/2009 12:09 PM (GMT 0)
OK..update from earlier in a.m.. Wanted to add that I did not move my bowels yesterday at all, so knew I was in for a clean out today..lol. Just went for the third time....no urgency...the stools were a bit more narrow but NO mucus and NO blood...hmmm. Could it have been hemmies causing the blood since I have been on my feet a LOT lately, especially yesterday? I do have internal and external hemmies. Ah.....that would be a good thing instead of the ulcerative proctitis coming back.
Posted 12/15/2009 4:30 PM (GMT 0)
It could definitely be hemmies. I know you're feeling great, but really try to take it easy! :)
Posted 12/15/2009 5:21 PM (GMT 0)
I am not on Remicade so I can't speak to that part. Sometimes when I taper the pred I have a day or two of a mini flare up, sometimes it improves as my body adjusts to the taper. There have been other times I had to go back up for a week and then taper again but hopefully your body is just adjusting. Can you increase your suppository to every night to help as you taper? Also, make sure you are getting enough sleep!
Posted 12/15/2009 5:25 PM (GMT 0)
I am not on Remicade, but ... I have taken Prednisone for 3 months to no avail and 6MP fails me too. The reason for it is that I am very prone to colon infection (WBC in my stools) and I  seem to get one every year in the middle of the summer. We don't know what was first, the flare or the infection. I am treated again with Flagyl (ugh, feels so crummy) and Levaquin and I am showing lots of improvement. Long story short: Have you been tested for parasites, viruses, infections in your stool? All that medication wont work if you have an underlaying infection in your colon - which seems to be the reason for me for all medication to fail. You might want to get that checked out and submit lots of stool samples. Not fun at all, but hey - everything drawn into consideration. All the best, Christine!

P. S. Can hemmies cause dripping blood into the toilet bowl? Just curious.

Posted 12/15/2009 5:32 PM (GMT 0)
Christine, My Dr. told me the UC may show symptoms as our bodies begin to heal and adjust to the Remicade. He said it can take up to four infusions for us to show no symptoms of UC. I also had D with mucous this week and I am on around the same schedule as you are. My 3rd infusion is scheduled for Jan. 9th. Hopefully our UC will never be as bad as it was :)
Posted 12/15/2009 5:38 PM (GMT 0)
I don't understand. You are getting infusions of Remicade, but still have to take Pred? Why is this?
Posted 12/15/2009 6:15 PM (GMT 0)
She just started and is tapering off of it.
Posted 12/15/2009 8:02 PM (GMT 0)
Joylu, I was becoming prednisone dependent and the doctor was extremely concerned about that. He said that prednisone has a long list of side effects whereas the Remicade has a short list. Before starting Remicade, I wasn't able to taper down to 20 mgm of prednisone without flaring. The doctor hopes to have me off the prednisone completely by year's end. I sure hope so too. He took me off the 6MP a few weeks before starting Remicade. My blood work has never been better. On the 6MP my white count went down as far as 1.6 while on 100 mgm. I went down to 50 mgm of 6MP and the white count did go up to 3.5. Now it is 5.1, normal at last!
I will take the cort suppositories since I noticed blood this morning. At least I have no urgency, which is a blessing in itself. I used to have a port a pot in almost every room in my house and was too embarrassed to have company over. Now the port a pots are all down the basement and I am looking forward to entertaining over the holidays!
Posted 12/16/2009 1:53 AM (GMT 0)
Hey Christine,

I hope your feeling better. I just had my second infusion and feel great but I'm still on 30mgs of pred and tapering. I really hope that its not just the pred that is making me feel better but we'll just have to wait and see...

Good luck to you!
Posted 12/16/2009 5:16 AM (GMT 0)
christine,

yeah i still have some symptoms of uc, have really since being on remi.  the difference is, they are very liveable.  I still don't have very formed stool, but not going real often, and i can hold it.  i have my third infusion thurs.  i would say that as long as your symptoms are minor, you are probably fine.  I have some better days than others, but i am so much better than i was.  I have put on 30 lbs. in the last couple months....need to slow down...lol

Posted 12/16/2009 5:23 AM (GMT 0)
I would definitely not go crazy eating everything and anything. I notice that even while in remission, ill have good or bad days based on what I eat. The more natural I eat, the better my stools TMI, right? I have been cutting back on the sugars and chips and I've been doing wonderfully. A few weeks ago I felt like I was heading into a flare but I've managed to save myself by staying away from crap food. Take it easy on your gut, eat healthy and keep using probiotics. I hope you continue to feel great!
Posted 12/16/2009 5:38 AM (GMT 0)
Hey Christine!

I hope this finds you doing better.. It sounds like it could be the Hemmie's.. especially if you didn't have ANY BM's the day before. I have a hemmi or two and every once in a RARE while since my one and only infusion I'll see a TEENY WEENY blot of blood on the TP.. I panicked at first, but then the next time I'd poo it would be gone and I'd be ok agian.. So.. I hope it's hemmies and that you will be just fine :) (not that I wish you hemmies, but that's better than UC.. LOL...)
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